Skip to main content
SpringerLink
Log in

Intimate Data: Exploring Perceptions of Privacy and Privacy-Seeking Behaviors Through the Story Completion Method

  • Conference paper
  • First Online:
Human-Computer Interaction – INTERACT 2023 (INTERACT 2023)

Part of the book series: Lecture Notes in Computer Science ((LNCS,volume 14144))

Included in the following conference series:

Abstract

Privacy is a fundamental human right in the digital age. With the proliferation of intimate health technologies, such as data-driven apps and connected devices that track bodily care and sensitive topics, privacy is increasingly critical. In this paper, we explore the complexity of intimate data and user perspectives and the choices they make to protect themselves. We introduce a story completion study with 27 participants to examine individuals’ concerns about data privacy, their protective or avoidant actions, and the potential mismatches between privacy concerns and actual behaviors. We suggest future research that combines User-Tailored Privacy (UTP) and participatory threat modeling to create privacy solutions that account for users’ needs and the potential risks and harms associated with the use of their data.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 79.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 99.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Almeida, T., Balaam, M., Bardzell, S., Hansen, L.K.: Introduction to the special issue on HCI and the body: reimagining women’s health (2020). https://doi.org/10.1145/3406091

    Article  Google Scholar 

  2. Almeida, T., Comber, R., Wood, G., Saraf, D., Balaam, M.: On looking at the vagina through labella. In: Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems, pp. 1810–1821 (2016). https://doi.org/10.1145/2858036.2858119

  3. Almeida, T., Shipp, L., Mehrnezhad, M., Toreini, E.: Bodies like yours: enquiring data privacy in femtech. In: Adjunct Proceedings of the 2022 Nordic Human-Computer Interaction Conference, pp. 1–5 (2022). https://doi.org/10.1145/3547522.3547674

  4. Arora, S., Yttri, J., Nilsen, W.: Privacy and security in mobile health (mhealth) research. Alcohol Res. Curr. Rev. 36(1), 143 (2014)

    Google Scholar 

  5. Bardzell, J., Bardzell, S., Lazar, A., Su, N.M.: (re-)framing menopause experiences for HCI and design. In: Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems, pp. 1–13 (2019). https://doi.org/10.1145/3290605.3300345

  6. Braun, V., Clarke, V.: Thematic analysis. American Psychological Association (2012)

    Google Scholar 

  7. Brown, B.: Studying the internet experience. HP laboratories technical report HPL 49 (2001)

    Google Scholar 

  8. Bussone, A., Stumpf, S., Wilson, S.: Designing for reflection on shared HIV health information. In: Proceedings of the 13th Biannual Conference of the Italian SIGCHI Chapter: Designing the next Interaction, CHItaly 2019. Association for Computing Machinery, New York (2019). https://doi.org/10.1145/3351995.3352036

  9. Clarke, V., Braun, V., Frith, H., Moller, N.: Editorial introduction to the special issue: using story completion methods in qualitative research. Qual. Res. Psychol. 16(1), 1–20 (2019)

    Article  Google Scholar 

  10. Dilisha, P., Ann, B., Mark, W., Jill, S., Judith, S.: I feel like only half a man“: Online forums as a resource for finding a” new normal" for men experiencing fertility issues. 3. Proc. ACMHum.-Comput. Interact 3 (2019)

    Google Scholar 

  11. Draper, N.A., Turow, J.: The corporate cultivation of digital resignation. New Media Soc. 21(8), 1824–1839 (2019). https://doi.org/10.1177/1461444819833331

    Article  Google Scholar 

  12. Endler, M., Lavelanet, A., Cleeve, A., Ganatra, B., Gomperts, R., Gemzell-Danielsson, K.: Telemedicine for medical abortion: a systematic review. BJOG: Int. J. Obstetrics Gynaecol. 126(9), 1094–1102 (2019)

    Google Scholar 

  13. Erickson, J., Yuzon, J.Y., Bonaci, T.: What you don’t expect when you’re expecting: Privacy analysis of femtech. IEEE Trans. Technol. Soc. (2022). https://doi.org/10.1109/TTS.2022.3160928

    Article  Google Scholar 

  14. Gibbs, A.S.J., Estcourt, C., Sonnenberg, P., Blandford, A.: Are hiv smartphone apps and online interventions fit for purpose? In: ACM International Conference Proceeding Series Part F128634 (2017)

    Google Scholar 

  15. Gkatzidou, V., et al.: A user-centred approach to inform the design of a mobile application for STI diagnosis and management. In: 27th International BCS Human Computer Interaction Conference (HCI 2013) 27, pp. 1–6 (2013)

    Google Scholar 

  16. Haimson, O.L., Gorrell, D., Starks, D.L., Weinger, Z.: Designing trans technology: defining challenges and envisioning community-centered solutions. In: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems, pp. 1–13 (2020). https://doi.org/10.1145/3313831.3376669

  17. Kokolakis, S.: Privacy attitudes and privacy behaviour: a review of current research on the privacy paradox phenomenon. Comput. Secur. 64, 122–134 (2017)

    Article  Google Scholar 

  18. Levy, K.E.: Intimate surveillance. Idaho L. Rev. 51, 679 (2014)

    Google Scholar 

  19. Liu, B., Lin, J., Sadeh, N.: Reconciling mobile app privacy and usability on smartphones: could user privacy profiles help? In: Proceedings of the 23rd International Conference on World Wide Web, pp. 201–212 (2014)

    Google Scholar 

  20. Mehrnezhad, M., Almeida, T.: Caring for intimate data in fertility technologies. In: CHI ’21: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems, pp. 1–11. ACM (2021). https://doi.org/10.1145/3411764.3445132

  21. Mehrnezhad, M., Almeida, T.: “My sex-related data is more sensitive than my financial data and i want the same level of security and privacy”: user risk perceptions and protective actions in female-oriented technologies (2023). https://doi.org/10.48550/arXiv.2306.05956

  22. Mehrnezhad, M., Shipp, L., Almeida, T., Toreini, E.: Vision: too little too late? do the risks of femtech already outweigh the benefits? In: EuroUSEC ’22: Proceedings of the 2022 European Symposium on Usable Security, pp. 145–150 (2022). https://doi.org/10.1145/3549015.3554204

  23. Mustafa, M., Zaman, K.T., Ahmad, T., Batool, A., Ghazali, M., Ahmed, N.: Religion and women’s intimate health: towards an inclusive approach to healthcare. In: Proceedings of the 2021 CHI Conference on Human Factors in Computing Systems, pp. 1–13 (2021). https://doi.org/10.1145/3411764.3445605

  24. Nurgalieva, L., O’Callaghan, D., Doherty, G.: Security and privacy of mhealth applications: a scoping review. IEEE Access 8, 104247–104268 (2020)

    Article  Google Scholar 

  25. Park, Y.J.: Digital literacy and privacy behavior online. Commun. Res. 40(2), 215–236 (2013). https://doi.org/10.1177/0093650211418338

    Article  Google Scholar 

  26. Sadowski, J.: When data is capital: datafication, accumulation, and extraction. Big Data Soc. 6(1), 2053951718820549 (2019)

    Article  Google Scholar 

  27. Shipp, L., Blasco, J.: How private is your period?: a systematic analysis of menstrual app privacy policies. Proc. Priv. Enhancing Technol. 2020(4), 491–510 (2020)

    Article  Google Scholar 

  28. Slupska, J., Dawson Duckworth, S.D., Ma, L., Neff, G.: Participatory threat modelling: exploring paths to reconfigure cybersecurity. In: Extended Abstracts of the 2021 CHI Conference on Human Factors in Computing Systems, pp. 1–6 (2021)

    Google Scholar 

  29. Statista: Digital health - worldwide (2023). www.statista.com/outlook/dmo/digital-health/worldwide. Accessed 20 April 2023

  30. Tuli, A., Singh, S., Narula, R., Kumar, N., Singh, P.: Rethinking menstrual trackers towards period-positive ecologies. In: Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems. CHI 2022. Association for Computing Machinery, New York (2022). https://doi.org/10.1145/3491102.3517662

  31. Watson, A., Lupton, D.: Tactics, affects and agencies in digital privacy narratives: a story completion study. Online Information Review 45 (2021)

    Google Scholar 

  32. Wilkinson, D., et al.: User-tailored privacy by design. In: Proceedings of the Usable Security Mini Conference (2017)

    Google Scholar 

  33. Wisniewski, P.J., Knijnenburg, B.P., Lipford, H.R.: Making privacy personal: profiling social network users to inform privacy education and nudging. Int. J. Hum Comput Stud. 98, 95–108 (2017)

    Article  Google Scholar 

  34. Wisniewski, P.J., Page, X.: Privacy theories and frameworks. In: Modern Socio-Technical Perspectives on Privacy, pp. 15–41. Springer, Cham (2022). https://doi.org/10.1007/978-3-030-82786-1_2

Download references

Acknowledgments

This work benefited from the BIG ERAChair EU-funded project through Grant agreement ID: 952226. ITI/LARsyS is funded by FCT Project UIDB/50009/2020; LA/P/0083/2020 - ITI - IST-ID.

Author information

Authors and Affiliations

  1. Instituto Superior Técnico, Lisbon, Portugal

    Diana P. Moniz

  2. Royal Holloway University of London, Egham, UK

    Maryam Mehrnezhad

  3. Department of Informatics, Umeå University, Umeå, Sweden

    Teresa Almeida

  4. Interactive Technologies Institute/LARSyS, Lisbon, Portugal

    Diana P. Moniz & Teresa Almeida

Authors
  1. Diana P. Moniz
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maryam Mehrnezhad
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Teresa Almeida
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Diana P. Moniz .

Editor information

Editors and Affiliations

  1. University of West London, London, UK

    José Abdelnour Nocera

  2. Reykjavik University, Reykjavik, Iceland

    Marta Kristín Lárusdóttir

  3. University of York, York, UK

    Helen Petrie

  4. University of Bari Aldo Moro, Bari, Italy

    Antonio Piccinno

  5. Université Côte d’Azur, Sophia Antipolis Cedex, France

    Marco Winckler

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this paper

Check for updates. Verify currency and authenticity via CrossMark

Cite this paper

Moniz, D.P., Mehrnezhad, M., Almeida, T. (2023). Intimate Data: Exploring Perceptions of Privacy and Privacy-Seeking Behaviors Through the Story Completion Method. In: Abdelnour Nocera, J., Kristín Lárusdóttir, M., Petrie, H., Piccinno, A., Winckler, M. (eds) Human-Computer Interaction – INTERACT 2023. INTERACT 2023. Lecture Notes in Computer Science, vol 14144. Springer, Cham. https://doi.org/10.1007/978-3-031-42286-7_30

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-42286-7_30

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-42285-0

  • Online ISBN: 978-3-031-42286-7

  • eBook Packages: Computer ScienceComputer Science (R0)

Publish with us

Policies and ethics

Societies and partnerships

Search

Navigation